Sunday, May 31, 2009

We had a good day today. We tried going to church again with about the same result. He fell asleep in Sunday School, and stayed asleep for about two songs in worship. They have given us access to the baptismal changing room to take care of Jonah, so we don't have to go into the nursery with so many germs. It was so great, because we fed and changed him there (peed right through his cute outfit), but we could hear the service the whole time over the speaker. I'm glad we have a place we can go... much easier than feeding and changing in the car.We then went to a friend's house for lunch. Jonah did okay. I'd probably give him a 6 out of 10. He cried through lunch, so we took turns holding him in the living room under the fan. He then had a poopy diaper, but luckily it didn't get on his bandages, so I didn't have to do an away-from-home dressing change. Let me just say that judging by what I packed to go to lunch at a friend's (including his baby swing), we're going to need to rent a bus to go to the beach. RIDICULOUS.Dressing change went well. Tonight was the first time doing it in the basement. Jonah didn't seem to notice a change, and everything went smoothly. He even fell asleep while we dressed his arms. I've started wrapping his head to protect his forehead. I may not do it all the time, but I at least want to give it a chance to heal up. Jonah just ate FIVE OUNCES (I usually can't get him to eat four), and he's acting like he still wants more. I'm cutting him off though. I don't want him to throw it all up. This last feeding went really well, but we're still struggling most of the time. I'm thinking about switching him to a liquid form of Prevacid, because it's just so hard to tell how much he's really getting. He likes to spit it out when I give the granule water to him by syringe. I need something I can put in his bottle, so he doesn't notice it. Sorry this was so boring. I'm extremely tired. My allergies have been kicking my tail today, and I can't really take anything (except Benadryl and that completely knocks me out) since I'm breast-feeding. I'm hoping Jonah will cooperate and maybe I can get in bed before midnight.

40 comments:

I can't believe I'm the first to leave a comment! I would give Jonah at least a 7.5 on behavior today at lunch. After all, it was a pretty busy time, and since he was kinda "off schedule" he did pretty well. I am thinking that it would be good to record Matt singing the Star Wars theme and then getting Jonah an ipod. Well, maybe not. Thanks for coming to share my birthday today. We all enjoyed it. Hope you all three rest well tonite, and I will be there with lunch tomorrow. If Jonah decides he likes me enough, maybe I can watch him so y'all can go to "big church" some day soon.Sandy

Sounds like you guys have had a pretty nice Sunday overall! I wanted to suggest the liquid prilosec (I have suggested this a couple of times, so please forgive me if I seem pushy...I just know people leave so many comments that you may have overlooked it. Plus it just worked so well for our son that I want to pass the info along).

It can be pricey if insurance doesn't cover it, but it worked so much better for our son than prevacid did. And we put it right in his bottle and he drank it without a problem. Anyway, if prevacid is working for you guys, then definitely keep using it, but if not or if the results could be better, prilosec would be my recommendation. Hope you get some great sleep and that you have some relief from your allergies soon. :)

Patrice,I am nursing too and I was told by my doctor that I could take Clariton for my allergies. It doesn't seem to make me as sleepy and it works well. You might want to double check with your doctor, but I thought I would let you know. Also, your basement is beautiful and Jonah is looking so cute and plump!!! So glad he's eating better!Laura

I hope tonight is restful for you and Jonah. I'll pray his forehead starts to heal better. I cracked up about your comment about needing a bus to go on vacation. It's hard with a little one and I certainly remember packing everything but the kitchen sink when I had tiny ones. Hang in there, I pray it gets easier for you. Hugs and prayers are always on their way from Michigan.

Yeah, I take Benedryl for allergies, but it doesn't seem to make me really drowsy. It helps on the plane though, because I can never sleep on international flights....I can get, oh, about 3 hours out of 14 of sleep with Benedryl... :)

Another second for the Claritin. I switched from Bendaryl (while pregnant) to Claritin (while breastfeeding). I am not sure what is happening with all the allergens this year, but I feel your pain. Hope you get some good rest tonight.

I don't know that I've ever posted a comment before today, but I've been reading religiously for months. I love seeing your pictures of Jonah. He is absolutely precious...and such a charmer!! Sorry to hear that your allergies are bothering you, mine kicked my butt about a month or so ago. And they got so bad I had no choice but to take some benadryl for them. I too am a breastfeeding mom and I noticed a significant decrease in my milk supply when I took the benadryl (just 2 doses-12 hrs apart). I was so scared I was going to lose my milk supply. I don't know if this is just me or if it's a documented risk for breastfeeding moms, but just thought I would share in case you do have to take some. I've luckily been able to get my supply back up to what it was before, but it took a good week or two. I was really surprised. Good luck and keep the adorable pictures coming. AshleyDurham,NC

I had a severe case of PUPPP with my 1st pregnancy - didn't go away when I delivered (actually, got worse - ugh!). I was talking Bendaryl, too - and I remember how rough that was. It's hard enough having a little one, and adding even more "sleepy" to the mix ... I'll be thinking of you and hoping you can find something else to relieve your allergies!

What a great church family you have! Your morning at church sounds like a success to me! And lunch, too? What a wonderful day!

As a mom of 5 (one currently nursing) my OB has always said I could take sinus medicine. Of course, with Jonah's situation, you'll want to call his pediatritian before you take anything that might affect him. I hope you can find something to take that helps you...it will make things easier taking care of Jonah if you feel better!! :)Jen

I've commented before that we had really good luck with Prevacid... and our son had reflux BAD! Just a thought... we totally didn't dissolve it... we just slipped it in his mouth. Our Ped told us it's best so that you don't lose anything. I was worried about choking... but truly (I even tried it in my own mouth) it melts right away... and tastes really yummy! May be worth a try... way easier!

P.S. Love the pics you've been posting.. and great to hear how y'all are (even when you think your posts are boring!)Keeping you in prayer,Joy (in Kansas)

Patrice - I just caught up on a few of your latest blog entries, and I had to let you know that I think you have the sweetest heart. I love that you are honest and genuine. I think Jonah is such a beauty (I LOVE the picture of him sprawled out on someone's lap sleeping!), and love the way you explained the names of your two boys and the purpose of their lives (both past and present). I will continue to pray for Jonah, and for you and your husband as you care for him and love him. He is so lucky to have you both! Enjoy your new basement, and I pray that God continues to pour out his blessings on your lives in abundance.

I had a reflux baby too! he took prevacid from week 6 until he was over a year! one tip that might make medicine time easier.... disolve the pill in water the night before. we used a shot glass, crushed the pill and added a teaspoon (maybe half a teaspoon, I can't remember), covered it and let it disolve overnight (we gave him the prevacid same time every morning). those granuals won't be there and it has a slightly berry smell/taste which makes it easier to swallow. worked wonders with us! good luck and kiss little Jonah for our family! love you guys!

I've been out of town since 5-28.Even at the beach celebrating BD of VBFITWWW. My VBRFITWWW & I made sure her(aka DIVA) every need was taken care of, even before she knew she had a need!! Laughed till we cried. OFTEN which leads to bladder control issues which leads to frequent diaper changes and if any of us were capable of lactation we would have wet that too! Which brings me to the reason for this comment. Jonah and the Williams family would come to mind from time to time not really sure why,then I realized... I missed ya'll... After reading what I had been missing I know why. No poopy diapers, but the comment was made on the way home about boogies and needing to rectify the situation asap.Room is beautiful built and filled with LOVE.Good luck come milking & feeding time.prayers as always2shoes

Please, oh please, look into using a Neti pot. It's a nasal washing thingie--you flush your sinuses with a saline solution twice a day. I know how awful it sounds, but I've suffered with allergies for 30 years, and the very first time I used it, I got incredible relief. I'm even off my allergy medicine for the first time in decades. Please look into getting one. I promise you you'll love it.

Hi Patrice! My name is Jenny, & I've been following you for a while now and have commented several times. I just gave you an award on my latest blog post! I love your spirit and your grace- you deserve the best! So head over to www.zachsgang.blogspot.com and see what's up!

Patrice, I am praying that you find something you can take to get some releif from those nasty N.C. allergiesI think Jonah was just perfect at church today!! It does my heart good to see that sweet man baby at church,knowing how the body has been so touched by his sweet spirit.I hope wrapping his little forehead helps it start to heal, he looked just adorable today. Praying for you all to have a restful night. I will see you this week so GEE GEE can get her Jonah fix.

There was nothing boring about your post. Every time your blog pops to the top of my list, it makes me smile. I pray for you often. I am glad you got to church and to visit with a friend. About the amount of stuff you need to carry with you to care for Jonah, it doesn't sound much different from a healthy child. And for that matter, his tolerance of church sounds like my girls at that age, too. One was healthy, the other, not. They are older now, and can carry their own stuff!

Just wanted you to know that my bottom is still big, and I still pray it off for you all the time! I don't always leave a comment, but I am always checking to see how Jonah and both of his precious parents are doing. My daughter, 5 always looks at his pictures and since she spent some time in the burn unit she always takes on this Dr. tone and says, "Oh precious little baby, wellllll....it's gonna be okay, yo mamas gunna make yu aw betta hunny. Donchu werry. Yu aw gunna be jus purfect wunce my Jesus heals yu!!" It really is priceless to hear. Especially since she is talking to the computer. Anyway, we're praying! Keep smiling and laughing and like my daughter said, He will make little Jonah all betta! Love from Mexico, Missy

hellomy lo is on the prevacid too for bad reflux, What we have found that works for us is to place the med on a spoon, add just a few drops of water and then place in mouth and let him lick it off the spoon. Our lo loves it. We have also just placed under her tongue and then drop a few drops of water in. We tried teh syringe thing and I felt like there was too many granules left behind.

I am a blog lurker but just wanted to let you know that my mom and dad have a house at the beach that is 4 bedroom and they told me I can have friends over whenever I want. I just realized how young that makes me sound but I have two kiddos and one on the way and am almost 30 :) Anyway--not sure if you have a place at the beach or not but it is at Atlantic Beach and really spacious. I think it would be easier for you guys than a hotel room. Let me know--I am a SAHM and would love to go down for a week or two and actually meet you guys. I would even be willing and able to baby sit so you guys could go on a date while at the beach. my blog is cjdenton.blogspot.com and my email is cdenton_80 at yahoo dot com if you are interested.

sorry to hear about your allergies. glad you guys had a great sunday. that was really nice of your church to give you acess to that room where you guys can still hear the service. I was just wondering if you could maybe post a picture of cute Jonah in his church outfit if you guys have him one.

There is a bottle that you can put the medicine in that is supposed to hide the taste. I don't know if it would work for you guys.Maybe! Someone told me walmart has them, but I don't know for sure. This is a link that gives you an idea but I think there are others out there: http://www.doulashop.com/products/newborn-essentials/medibottle.html

I didnt want to leave this as a comment but couldn't find an email address ( I honestly didn't look that hard, oops!) Anyway, my son was on Prevacid for Reflux for the first 6-7 months of his life and I know our co-pay was HUGE, like $52 for one month's supply. Well the reason I am writing is I have a full 2 months worth left and if the capsules are the same size, amount, whatever, and your co-pay is high too I thought maybe you would want the extras. I know I know sharing of perscriptions is not cool, but they are all still safe in their foil bubbles and if Jonah has the same perscription as Xander did I don't see a point in letting it go to waste!Anyway, my email is amymcfarland3 at aol dot com Please let me know

Yay for a good Sunday! I'm thrilled that you guys are able to take care of Jonah in the baptism dressing room and that you can still hear the service. Jude had a hard time with the Prevacaid, too. I think I told you last Sunday that he was taking that, but it's actually Prilosec (sp?) - I get the "P" drugs mixed up. I'm sure that Prevacaid works well with babies who don't spit that little capsule all down their chin, into their neck rolls, down the front of the onesie...but he does well taking the Prilosec with the syringe.

And I've been meaning to tell you that I'm getting pretty good at making AIO diapers. I know you like the pocket diapers better, but they intimidate me at the moment. BUT...if you'd like some AIOs, I'd be glad to give some to you.

And one last thing - I should probably email you since this is getting to be the longest comment ever, but I wanted to let you know that Shawn and I haven't forgotten about getting together with you guys. Jude and I are both sick and I just don't see the sense in even risking Jonah or you guys getting germs. Once everyone is germ-free, we'll call you. :)

I was told by several Lactation Consultants that Claritin was safe to take while nursing although not sure if this will help with your allergies. Claritin seems to be hit or miss for many.

Regarding Prevacid...are you giving it to him on an empty stomach? Our GI doc, who specializes in infant reflux, says that prevacid is more effective when you give it 30mins before a feeding to allow it to reach the small intestine and get absorbed into the bloodstream. It has a different mechanism of action than Zantac which can be given pretty much anytime you want. You can definitely get a liquid suspension form that has to be refrigerate but it slowly loses activity over time so usually you have to refill it every 2 weeks which can be a pain. I'm not sure if the liquid suspension is a delayed-release like the tablets so you may not have to wait 30mins.

Things we have tried is actually holding the tablet on our son's tongue with our thumb and allowing it to dissolve there. Then we would give him a few sucks of water from a bottle, wait 30mins, and then feed him. I've heard of others placing the tablet inside the cheek and allowing it to dissolve. I don't think our son took prevacid well from the syringe until he was about 5mos. And now that he's almost 9mos I dissolve it on a feeding spoon and give it to him that way. It's a pain in the butt in the morning to make him wait 30mins to eat, but it definitely makes a big difference in keeping his reflux under control.

How wonderful that you have a special place to change and care for Jonah at church. WTG!! Jonah on the great feeding! It's been really great following your story. Jonah is growing so fast and you both are doing an INCREDIBLE job caring for him. I hope you feel better soon.

I don't think I have ever commented, but I read your blog and pray for your family. My oldest daughter had reflux, we used a liquid medicine, and poured the required amount into the nipple of her bottle and filled the nipple with breastmilk. Our doctor was the one who told us to try this. She never seemed to have any problems taking it after that. Once the milk from that was gone, we screwed the lid back onto the bottle and she drank the rest of her bottle!

Oh, and I second the claritin. My OB has said the same that it is okay while nuring.

Patrice - you can get liquid prilosec (or was it Zantac?) I dont remember - made for you by a pharmacist at a private pharmacy in town... Andrews or my favorite Jonestown Pharmacy. they can flavor it as well - because otherwise it is nasty . It worked for us. I would think Ike at Jonestown could make the prevacid as well.

I stumbled across your blog when I saw it another blog and Jonah's story really touched my heart, I haven't been able to stop thinking or stop praying for him. I have a little baby girl who is only about 3 weeks younger than Jonah, her name is Reese, and it really hits home when I hear about another baby about her age that is going through so much pain, I don't know if I could take it if I couldn't make my baby's pain go away, you are a GREAT mommy and very strong and that's what Jonah needs. You are the perfect mommy and daddy for him because you'll never give up on him. It makes me cry all the time, I balled the first night I saw your blog and I couldn't do anything but just pray over and over for him and you guys. I am so sorry, but I KNOW that God is going to give your family a miracle and he WILL live a very long life. I have so much love your little boy and I don't even know him. On another note, I am breast feeding and my baby does the same thing, she'll eat really steadily for about 10-20 min. and then she'll pull away and come back over and over and I couldn't figure out why, her pediatrician said she's probably just done eating and just wants to suck, but I saw that on your blog and it sound very familiar. All the little things that Jonah does are exactly what Reese is doing too, she loves laying on her changing table and she'll just kick an punch and smile, she hasn't laughed yet but it's coming soon I can tell. She also does the big pucker and says "whaaa" and she loves to sit up and look around and if she can't she will cry. We will continue to pray for you guys all the time and we love you even though we have never met. If you want to visit our blog it is http://jesseashley.blogspot.com/

Boring!!! Never!! So glad that your life has a somewhat routine that you are now having a "normal" day every now & then.

Glad to hear you were able to get out for lunch & spend time with friends. I bet there were not any complaints about holding that precious baby boy.

I had to laugh about how much you have to pack to go out for lunch. I remember, when my son was born (almost 25 yrs ago) we had to buy a bigger car (ha) but you will learn as you go along you don't need 1/2 the stuff you think you do. It is amazing that 1 little person needs soooooo much stuff.

Good luck with your allergies, they are horrible here in NC this year...I take 2 allergy shots per week, plus xyzal & still am having a rough time.

Take care, love & prayers to all of you. Scratch Deac behind his ears..

Just a little tip, that I learned with my little one, since he has pretty much been on medication since he came home from the NICU...He takes Zantac for reflux, and I just put it in a nipple and he sucks it down like he's taking a bottle, it's worked like a charm from everything from his zantac to his vitamins, as well as motrin and tylenol. The syringe used to make him gag or he would just spit it out. I hope that you'll try this and that it helps! :)

Our son had terrible reflux as well, but we had a great pharmacist at Lewisville Drug (christian owned, too) who made a flavored suspension for us- you would have thought it was candy- he LOVED it and it worked well. Hope that helps. Praying that you feel better soon too.

be really carefull about what you take even if it is safe for breastfeeding because anything that dries up your nose will dry up your boobs! :) (Thats what my Lactation lady told me!)

Oh and I didnt read through all the comments.. but be careful on the liquid prevacid, do some research. Everything I've read says that by compounding it, it doesnt last as long. Most pharmacies will only give you a 2 week supply, but research says it looses effectivness after 1 week! As much as I just want my baby to be comfortable going to the pharmacy once a week would be a little hard.. oh.. also not all pharmacies do it.. Only one does in my area.

Hi! I've never commented before have kept up with Jonah and ya'll since he was born. I have a 5 month old who we just found out recently was born with a narrowing in her airway. She has undergone 3 major surgies for this but the ENT said that we had to keep her reflux under good control as this would cause irratation and swelling in her airway. Her reflux is really really bad. We tried her on Zantac at first and what I realized about this medication through talking to doctors is that the dosage is a weight based thing and she was prescribed .2 mls and really should have been getting 1.9 mls based on her weight. Not sure how much of that he is getting but just wanted to throw that out there.

After this last surgery she was put on the Prevacid Solutab thing. The doctor prescribed 7.5 mgs but it only comes in a 15 mg tablet. 7.5 mgs was not doing the job so I gave her the whole thing and it seems to keep it under control most of the time, but not always. I couldn't give it to her out of a syringe either because too many little granuales were left over. So I do what others have suggested and break it in half and hold it on her tounge, then do the other half. It takes literally seconds to disolve that way. And sometimes I do put it in a baby spoon, add a drop of water and then let her take it from the spoon. She gets it all that way and that has worked pretty good. But she has been eating out of a spoon since about 7 weeks old. ha!

And one more thing, I was giving her Prevacid along with the Zantac even though I wasn't told to do this and it seemed to work well for her. But the ENT said he talked with a GI doc and the GI doc did not recommend doing this because they seemed to counteract against each other. I haven't done much reading or looking into this and I did feel like it made her's better even though he was saying it shouldn't have. But if this is a true fact, then something like this might be going on with Jonah.

Also, she has been on every single formula known to man. She is now on Infamil Nutramagin which is the hypo allergenic one and I don't know how much good it's doing but she likes it and along with the meds, it is a little better.

Anyway, sorry this is so long. Thank you for sharing your life with us, it is never boring. Let us know what you find out about the meds and what you are told to do.